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Chiari Malformation Community
This patient support community is for discussions relating to Arnold Chiari Malformation and Living with Chiari Malformation.
Chiari Diagosis Process
by Beachgirl54, Jul 16, 2008 09:26PM
I live in N.C. and am 54 years old and saw 4 specialists last Nov. before being correctly diagnosed with Type One Chiari Malformation. It takes an experienced Radiologist to know what they are seeing on your MRI to diagnose this condition. My neurologist's nurse called me with the results saying I had "Cerebellar Ectopia" and she had no idea what that meant....it is just another term for Chiari Malformation which means you have a herniation of the cerebellum tonsils.
Each doctor I saw gave me a different diagnosis stemming from Trigeminal Neuralgia, brain tumor, MS, and Lupus, and that is because many of the symptoms are the same. I also had Cervical Stenosis which was treated with surgery in March because it was causing me more pain and discomfort and is related to some of the symptoms of the Chiari. The Cervical Stenosis was not diagnosed until I was being seen for the Chiari to discuss possible surgery. The symptoms that sent me to the neurologists last Nov. were left-sided facial pain and left-sided scalp tingling and sensitivity. My left eye was very sore and tender to the touch, I had some trouble swallowing, headaches and stiffness in the lower back part of my head at the neck area, hand, arm, and leg weakness with sporatic pain, balance issues, dizziness, memory problems and word recall issues. Everyone with Chiari does not have the same symptoms which makes it even more difficult to diagnose, but it can be seen on an MRI IF the right person is reading your MRI and the right kind of MRI is performed. I underwent a full body MRI to make sure there were no problems with spinal fluid flow anywhere else and that is when the Cervical Stenosis (narrowing of the cervical spine) was found.
I sought treatment in Aurora, Colorado with Dr. John Oro for the Cervical Stenosis and since my Chiari is/was 6 mm as of last March, we are going to monitor it with periodic MRI's to see if it worsens or start to compromise the spinal fluid which is the biggie. Please do not rush to undergo surgery for this condition unless it is warranted and make sure you have the best neurosurgeon that is experienced with surgery for Chiari. There is only one opportunity to do it correctly and any surgery after that is just repair work and can throw you into type II which is a worse type of Chiari. Some people never have to undergo surgery as their symptoms are minimal and therefore manageable, but this is a decision that you and your neurosurgeon make together. Good luck and know that you are not alone.
Each doctor I saw gave me a different diagnosis stemming from Trigeminal Neuralgia, brain tumor, MS, and Lupus, and that is because many of the symptoms are the same. I also had Cervical Stenosis which was treated with surgery in March because it was causing me more pain and discomfort and is related to some of the symptoms of the Chiari. The Cervical Stenosis was not diagnosed until I was being seen for the Chiari to discuss possible surgery. The symptoms that sent me to the neurologists last Nov. were left-sided facial pain and left-sided scalp tingling and sensitivity. My left eye was very sore and tender to the touch, I had some trouble swallowing, headaches and stiffness in the lower back part of my head at the neck area, hand, arm, and leg weakness with sporatic pain, balance issues, dizziness, memory problems and word recall issues. Everyone with Chiari does not have the same symptoms which makes it even more difficult to diagnose, but it can be seen on an MRI IF the right person is reading your MRI and the right kind of MRI is performed. I underwent a full body MRI to make sure there were no problems with spinal fluid flow anywhere else and that is when the Cervical Stenosis (narrowing of the cervical spine) was found.
I sought treatment in Aurora, Colorado with Dr. John Oro for the Cervical Stenosis and since my Chiari is/was 6 mm as of last March, we are going to monitor it with periodic MRI's to see if it worsens or start to compromise the spinal fluid which is the biggie. Please do not rush to undergo surgery for this condition unless it is warranted and make sure you have the best neurosurgeon that is experienced with surgery for Chiari. There is only one opportunity to do it correctly and any surgery after that is just repair work and can throw you into type II which is a worse type of Chiari. Some people never have to undergo surgery as their symptoms are minimal and therefore manageable, but this is a decision that you and your neurosurgeon make together. Good luck and know that you are not alone.
Member Comments (1)
by james59, Jul 21, 2008 02:15PM
To: Beachgirl54
I live in ne Georgia on the nc border, I was diagnosed at age 58. I had quit work and filed for disability due to all these different problems, unending, many I have had most of my life. In order to get disability, I had to prove that I was hurting all over and was insulted by a few doctors, but even though x-rays show a lot of arthritis, I don't know if they will even consider chiari 1 8mm, I don't work and have insurance, you could still have to pay out thousands to see a second neurosurgeon, any ideas, James59
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